Grief a motivation to stay the course for a cure

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“Time waits for no man,” “Time marches on,” “Live for Today” are sayings that we hear from time to time. For those who know me, I don’t worry about the future very much, or so I say. The truth is I am constantly reminded that life and time are precious. But I refuse to spend time worrying about tomorrow to the extent I lose what I do have, today.

Many years ago I was talked into forming a Parkinson’s support group. I was afraid to do that because I didn’t want to “See the Future” as I met patients who were farther along the Parkinson’s journey than I was. But I was surprised by what I got in return for reaching out to those in need.

It was much more than I ever expected, a sense of community that comes immediately upon meeting a fellow journeyer. I found as we talked about symptoms and challenges, there was mutual understanding and a calming sense that “We were not alone.” I learned very quickly that time was not the sole factor defining the daily small losses of physical abilities. So, my approach was to take the best of each day and build on it and to cram as much into each day as I could.

I spend a lot of time raising money to find the cure. As soon as one event is finished, we start the next. We will find the cure, I have no doubt, but “Time marches on.”

This last month has challenged my beliefs and optimism. During the last 30 days, four members of our support group have passed away, in addition to the father of some people we just met at the Florida Summit of the Tour de Fox. This loss is disheartening, and freaky.
Continue reading Grief a motivation to stay the course for a cure

Parkinson’s makes a splash on USA’s Royal Pains

I curled up to watch the season premiere of Royal Pains the other night and the signs popped out at me.

Handwritting that gets smaller and smaller? That’s impossible, the character said. No. No, it’s not. Getting clumsier? Tremors? What does it mean? All of my Parkinson’s sensors went off.

And when the doctor, Hank, told the 20-something Aubrey — a reality TV star — that it seems likely that she’s in the early stages of Parkinson’s disease. Enter the sad, depressing music and a cut to commercial.

I was lying on my couch watching this, and as the commercial started, I actually sat up — feeling like the wind had been knocked out of me. And yet, while an understandable reaction, I felt mad at myself for feeling that way. It’s been nine years since that moment Dad sat me down on the back patio to tell me the news. It’s been nine years since I heard the word “Parkinson’s” and then couldn’t hear the rest. Or see through the tears. And it’s been a great nine years since thanks to my dad’s attitude and the family and cause we’ve found in the Michael J. Fox Foundation and Team Fox.
Continue reading Parkinson’s makes a splash on USA’s Royal Pains

Love.

Supporting the cause by supporting a new Team Fox family member

Lately I’ve felt like I haven’t really been contributing much to the cause. I find myself in more of a background role, itching to get started again on a new Parkinson’s project.

Emily and I went up to Morristown, N.J., recently for a friend’s fundraiser, and I was telling Stephanie, from the Michael J. Fox Foundation how I was feeling. She reminded me that in supporting those people and getting others involved in the cause, I’m still doing something amazing.

The next week, I really got to see this in action at the Philadelphia Marathon. And I’m so grateful.

Continue reading Supporting the cause by supporting a new Team Fox family member

Let me tell you a little story about my Mom

1519599_698695746830758_1959666373_oA little while ago, The Michael J. Fox Foundation asked me to interview my Mom for a newsletter about the PPMI study that she’s involved in.

They wanted the personal touch of a mother and daughter talking about why my mother is so awesome and involved. (OK, so maybe the author is biased. Just a tad.)

In the end, I wrote a novel, so only a small part appeared in the newsletter. See the whole piece below.

Fall 2014 Newsletter
Continue reading Let me tell you a little story about my Mom

Finding partners in Parkinson’s

Look at this crowd of people at the Philly #partnersinparkinsons
Look at this crowd of people at the Philly #partnersinparkinsons
Taking a selfie with the panel for Building connections with community, family and friends!
Taking a selfie with the panel for Building connections with family, friends and community!

Recently, I had the absolute honor to be a panelist at the Partner’s in Parkinson’s event in Philadelphia.

What’s Partners in Parkinson’s? It’s a newish initiave from the Michael J. Fox Foundation and Abbvie to help Parkinson’s patients get the full benefit of a team when it comes to their journey. What’s that mean? Well, you can attend events to learn more about how you can help and about PD in general. Or you could find a new specialist. Or you could get one-on-one support from an advocate.
It’s a really cool tool that I’ve personally be able to use to get someone help finding a doctor in New York from right here in York, Pa.

The Foundation asked me to come out to Philly to be the “adult child” of a person with Parkinson’s on a panel called “Building Connections with Family, Friends and Community.” The goal? To share my story and help these people find ways to get involved or get more information. Most of the people in attendance were either recently diagnosed or have recently decided to get involved.

We had a conference call to prep for the panel, but in the end, we were told to be ourselves (they know better!) and share our stories. Simple enough, right? Well, I got a little nervous on the way.

Continue reading Finding partners in Parkinson’s

A childhood friend leads to a Team Fox run

Here's Mom and Des!
Here’s Mom and Des!

A few years ago on my mother’s birthday, she found one of her long-lost childhood friends on Facebook. Needless to say, she was really, really excited.

So imagine just how excited she got when that friend and her husband ended up moving about 40 minutes away. Since then, Mom and Dad have spent a lot of time with Desiré and her husband, Jack.

That lifelong friendship took another huge step forward recently when Jack announced he would be doing the Tri Rock Triathlon in Clearwater for Team Fox in my dad’s honor. Talk about friendship, right? Jack also had an uncle who battled Parkinson’s.

Take a look at Jack’s page, and please feel free to donate to the cause.

My name is Jack Foard. My good friend Bob Harmon has Parkinson’s.
Since his diagnosis some years ago Bob has given everything he has to do battle with the disease, but not just for himself, he has been fighting for every single person and every single family afflicted by the disease. In my own family, a dear uncle, Ted Bell lost the fight a few years back.
Bob has raised ten’s of thousands of dollars for Team Fox, funding worldwide Parkinson’s research. As the hundreds of people Bob has personally helped deal with the disease will tell you, Bob lives a full life made fuller by focusing on others.
Today I am focusing on Bob. I’m pulling my 67 year old body into shape to finish this sprint triathalon hoping that folks like you, folks who want to win the race against Parkinson’s will give a few bucks in Bob’s honor (or in honor of a loved one.)
I’m swimming, biking and running (walking actually) to honor Bob Harmon and the selfless way he has helped anyone and everyone touched by this cruel disease. And for Uncle Ted, a dear man and a fine athlete in his day. And for you and your loved ones too. The dollars you pledge today will be responsible for the improved treatments of tomorrow and someday the cure. Thank you so much for taking the time to make a pledge now.

Dad, Mom and Emily will be there as Jack raises money for his uncle, my dad, and all of you fighting this cause with us.

Find your moment for hope

The first time this month when my Dad got a hole in one, I was ectastic for him. And about a week later, with the second (his third ever), I thought it was full of it. I really did.

Hole in one No. 3
Hole in one No. 3

Sure, he called me and everyone else in the family to tell us about his success. But on Facebook, it was a different story. He wrote:

Here USA picture of the ball in the hole and me taking it out. I would give up both for a cure to PD. This is nothing compared to Nancy Mulhearn run this weekend. You rock Nancy.

 And a lot of his friends and Team Fox family flocked to Facebook for congratulations.
Jimmy Choi Another one?!? That’s 2 this year no?
Bob Harmon Jimmy Choi in 15 months. Nothing like your marathon history
Debi Daniels Bob Harmon you are one terrific man and we are proud to know you
Nancy Bowie Mulhearn Bob, I think you are the rock star this weekend; I am the background singer! Still seems unbelievable to achieve, but a hole-in-one takes center stage!!! Wow!!! Congratulations!!
Nancy Bowie Mulhearn Actually, shaking my tambourine with a rock band is next on the bucket list…
Jimmy Choi I’d trade the marathons for 1. 10 years ago I was a 2 handicap and I have never had a hole in 1!

Continue reading Find your moment for hope

Two holes in one? Is a Parkinson’s cure next?

Hole in one No. 2
Hole in one No. 2

In 2006, at the age of 57, I was diagnosed with Parkinson’s disease, a chronic, progressive, neurological
disease. That year I retired to enjoy the fruits of over 40 years of work. Like all people who receive life-changing news, I was devastated, but I was fortunate that I had a wise wife. Cecily reacted to the news
in an unexpected way. Her response was “Thank God it is not something that is going to kill you in 90 days. We can deal with this.”
Retirement offered many opportunities to do things you really never had done before. One of those was golf. I had played golf on a very sporadic basis during my life, but not in a way to have a golf swing.
Over the years my game has improved, but I knew that I would only be a mid-handicap player due to rigidity, a major symptom of Parkinson’s, and the hourly fluctuation of symptoms caused by the short efficacy of the medications. Despite the challenges, golf along with other exercise seemed to slow the progression of the disease.
It is every golfer’s dream to make a hole in one. So on May 6, 2013, I was ecstatic to achieve that dream. Of course I celebrated and then went back to playing golf. I was different then before because now I knew I could make a hole in one on any par 3, because I had done it. Being an optimist didn’t hurt either.

Hole in one No. 3
Hole in one No. 3

On September 14, 2014, I was fortunate to make my second hole in one. Again it was a time for celebration. Both holes in one were made on my home two courses at Lake Ashton, but they were on separate courses.
Eight days later on September 22nd we reached the first par 3, my golfing partners were giving me a hard time about since I had gotten a hole in one the week before, why don’t you just do it again. Laughing I stepped up to the ball and hit it. To my surprise it was a good shot, and to our surprise it went in the hole.
Two holes in one in eight days.
The odds of that happening are astronomical, even for a player who doesn’t have Parkinson’s.
I reflected on the accomplishment and tried to put in context. I have spent the last eight years living with Parkinson’s and preaching to all that will listen to keep active, positive and fight the fight. You never know what you can accomplish when you try.

Maybe next Monday they will find a cure for Parkinson’s.

Real talk on Parkinson’s, depression and Robin Williams

Many of the people I know in the Parkinson’s community have this go-to attitude and optimism that a lot of people would find surprising. To me, it’s par for the course. We’ve been introduced to so many people who aren’t going to wait for a cure, they’re going to help find it. And with that, comes a willingness to bravely look PD in the face with a smile. 

That said, I would guess that many of them struggle with bouts of depression. A lot of us do, whether we have PD or not. I’ve been having similar conversations with friends lately as they struggle, too, with the fact that they are the people others rely on to help build them up and make them smile. Those people sometimes don’t feel like they have anyone else to talk to. If you’re the one who needs to make others laugh and look at the bright side, it’s hard to admit you have your own demons. 

It’s something I’ve been thinking about a lot since the news of Robin Williams’ death. Yes, he was a funny, funny man. But I honestly wasn’t surprised that behind that depression was lurking. A lot of people jumped on the bandwagon to blame his Parkinson’s diagnosis on his depression. His wife had said she wasn’t ready to tell people yet. 

Continue reading Real talk on Parkinson’s, depression and Robin Williams